“This lets people advocate from our homes and our beds,” said Duane Pool, an Austin, Texas woman who was a registered nurse who was injured and became a pain patient.

One of her partners in the coalition is Ken Adams who lives near Gary, Indiana.

“There can be no more talking about us without us,” he said. “We want to be part of the conversation and where appropriate make sure we are part of it. Bottom line is we want a seat at the table.”

The emphasis of their work, at least for now, is the CDC Guideline. The plan is to inundate elected leaders in Washington and state legislature with messages every month through social media platforms.

The first outreach is planned for February 1.

“We need people from each state to be involved, because this issue is going to be fought state by state,” said Pool.

So how does someone get involved?

On Twitter, the group uses the hashtag #shareourpain, which has attracted dozens of followers in just the past week.

The website, also has a feature called #ResistBot which makes it easier for someone to contact their Congressional representative and their Governor.

A recent provocative interview with Dr. Terri Lewis on the National Pain Report encouraged the pain community to “get on the train or get out of the way,” which irritated some who believed they can’t advocate because they are disabled.

“We have the tools to do this. Engaged patients can make a difference,” she told us.

Adams, who read the article, pointed out that their coalition now lets folks who don’t think they are able to participate can do it sitting in front of their computer.

For now, this “movement” is exclusively focused on the opioid controversy, specifically the CDC Guideline.

They both acknowledge that their scope could expand in the future and include other chronic pain communities, including medical cannabis, kratom and others.

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The DEA is overstepping its authority when it tells doctors how to practice medicine, something the DEA SPECIFIES it legally is NOT allowed to do.
PROP was started by Andrew Kolodny as an outreach arm of Phoenix House.
The Guidelines were to be reviewed by an independent panel within the CDC…but that panel turned out to include the very group (PROP) that stood to benefit most.
Frieden violated Federal Law when he allowed Kolodny to be a stakeholder in the Guidelines. This makes Kolodny an accessory.

I have all this documented, & it WILL be sent out to a number of unrelated source. If I’m imprisoned, someone will have to send my unredacted paper to int’l media..

Hi, everyone! It’s been about a week since this story ran, and the outpouring of support and interest has been astonishing! So much so we have had to re-think our e-mail strategy to try to get back with everyone! We have attempted to respond personally to each email, but if we missed you please accept our apology. We also wanted to wait to comment on National Pain Report and give you an update! Thank you so much for your support of the Pain Advocacy Coalition #ShareOurPain initiative and your willingness to get involved and participate! A special thanks for Ed Coghlan’s and Dr. Lewis’s support! Thank you to National Pain Report and all of the advocacy efforts taking place. There are lot of people to collaborating together on behalf of the pain community, and we are encouraging everyone to be involved at whatever capacity that’s available to you. Thank you so much for responding so positively to our collaborative project! Our common experience bind us together. We have had a lot of feedback, so we decided to put the following together to help respond to everyone. We sincerely appreciate your reaching out to connect with us. Just to remind you, we are a collaborative group who use social media tools and platforms to support a patient-centric movement that is “e-Advocacy” based to speak with a unified voice to effectively amplify our message. Here is a link to help explain the philosophy of collaboration. https://painadvocacycoalition.com/collaboration/ We use social media and collaborative tools to collaborate, problem solve, advocate for ourselves and the pain community. The philosophy of collaboration is crucial to understand if we are to be successful. If we implement this philosophy, we can be successful, where others have failed. Check out this link to the article about “collaboration and crowdsourcing a common problem together” http://crowdsourcingweek.com/what-is-crowdsourcing/ The idea is that we are going to band together in order to work in a collaborative fashion to get our voices heard. This requires a paradigm shift from traditional leadership. We are all equal (thus a collaboration), there is no “boss” per say as we are all in this together, advocating for ourselves and for each other to achieve a common goal. Leadership is by acting of the group, for the group and by the group. It’s a group mentality and that means the wisdom of the collective group prevails. Each individual is responsible for guiding the group to success. We want to empower you and everyone else that is wanting to join the movement to advocate for themselves, as well as the pain community as a whole. We believe that if we unify, that our voice will be heard as we become louder and stronger. We will build each other up. This is what it is going to take in order to be heard. We need to not be fearful (which can be difficult) and we need to step out of the “stigma shadow”. I like this phrase because it clearly defines what… Read more »

Debra,
Very good comments on what’s happening to the loving people with Cronic Pain. Everything you talked about is true.
I can’t understand that making Opioids hard to get and even then the medication is half what was given before by a professional Pain Management Doctor that they didn’t come up 1st with something to help people with Cronic Pain that was as good or better to help us.

I will indeed jump on this band wagon, as I am a 64 yr old women who suffers greatly with RSD/ RCPD, severe back pain, fibro, RA, and migraines. We moved from Southern California a year ago to western central Missouri’ Not even thinking or advised that this is a place that only look at you as a drug seeker . If I were, I sure as hell wouldn’t be going to every DR in the area hoping to find it legally and safely. Even for my age, and being on Opiates for 14+ yrs with my illnesses they all just turned their heads. My Dr in CA said he wished every one of his patients were like me. Never an incident of any kind, never ran out of my meds, means taking incorrectly. Urine test great, I had some good days, and some bad days but still followed directions. Some really good pain control and some bad days but still followed what th Dr instructed. I would have never even thought it would be this bad. Come to find out Springfield Mo is the largest meth capital in the US. Well, that would be deadly for me as for one, wouldn’t even thinking about it, much less try and find it or doing it period.!! So, I have done some great researching online and couldn’t find nothing. The Doctors in Springfield MO and for what my diagnosis are, should not even be Dr’s. For two reasons, they didn’t even keep me on what i was taking, not even taking me seriously, I could show them I was a patient that cared about living, just not in so much pain I can barely get out in the community and meet all our new neighbors etc. We are New to the area but even getting ready to make myself presentable to the public. As I care what I look like, even with my illnesses. If they should ever get blessed with what i have, he/she will have a very hard time getting meds to let him enjoy what life they have left. As for me, I know my ending of life will be in a wheelchair not able to walk or stand for that matter. Then again, I wish to say, who the hell even cares as the Dr’s today are afraid of their own shadow. If a patient is in dire straights, help them for Gods sake. God is seeing what your doing to people that got their meds taken right out from under them, or are to afraid to prescribe what they need to have a little quality of life. Because if they do the opposite they will get their meds taken away for not following the Doctors dose they have them on. Believe me, you people who take it for fun, or to get high with the drugs, will be caught, and deserve to be taken away from them. But for Gods sake dont take the meds away… Read more »

1 year ago

Kevin Jelley

Two sugesstions:

1.) Consider a Go Fund Me Campaign. Nothing gets done without money. I’d love to direct some of my giving to a cause that greatly impacts my life.
2.) Create a Chronic Pain message board or provide links to existing message boards related to chronic pain. Many people use the comments section of published articles or blogs such as this to seek help for their personal circumstances. It’s not a very effective forum, and it distacts from the intention of the article.

I’m glad to find The Cronic Pain Group to be a part of.
I’ve been advocating on my own by emailing Congress Members of the House and Utah State Legislators but all to a blind ear basically saying a lot of what your letter said.
People get results from large numbers. To many of us are going either untreated or there Opioids dropped by great percentages. I know live with a 6 to 9 pain level where before it was a 3 to 5 . With this change my exercising has gone down and I’m even had to go part-time at work not being able to work full-time with the pain level I end up with working 8 to 10 hours per day now I’m lucky to get 3 or 4 hours I can work. But I feel lucky being able to do that because a lot of us can’t even did that.
Let me know what I can do to assist you.

1 year ago

James Watkins

With the purpose of this article, and a call for action/advocacy for pain patients and opiods issues, a few posts bring up Lyrica ( I am taking successfully for Neurophy). As a few others also have posted that Lyrica is a non-opiod medication.

1 year ago

David Schroeder

Lyrica seems to help me with nerve pain but it makes me kind of crazy = poor impulse control.

1 year ago

James Watkins

Hi, much to share. With medical issues and associated severe pain, have had great success with Tramadol (opioid) for over a decade. Now as many other people who live with severe pain we are being treated like criminals, for responsible taking medication. I have put disability issue blog (Ability Chicago Info) on hiatus since Dec. 2017, I’m tired and with others advocacy is all we have at this point, looking forward to be involved. TY

Having advocating for the chronic pain community with my blog for going on SIX YEARS … I sincerely hope this group has a lot more success than many other who have tried over the years.
IMO.. all previous attempts resembles trying to corral a large group of Ferrel cats. Maybe more and more of those in the chronic pain community are realizing that there is no way that they can “stay off the radar” and they can’t keep their heads LOW ENOUGH to not be impacted by what is happening to more and more chronic painers.
As the various Fed agencies continue to ramp up the war on pts… the individual chronic painers are going to have to decide if they are going to be PROACTIVE or COLLATERAL DAMAGE

1 year ago

Barbara W

I think what Kimberly suggested having a database for our condition on our ID or put in a pharmaceutical data base is Brilliant so no matter where we went to fill a prescription all doctors & pharmacists would be protected as well!!! I don’t know what it would do for those employed in certain proffessions but in general great idea!!

1 year ago

Joseph

They are forcing us to use medical weed very expensive but what choice I max out my credit cards iam done help if any one got some information Thankk younGod bless

1 year ago

Buck

I’m a chronic pain patient and i suffer more as i get older.i was comftebel until 8 month’s ago i was cut not 1 but 2 times.been on meds since 1996 learned to walk agin just from meds.i would hate to be just now being hurt.somthing needs to be fixed. This aint working.the BIG H train is here. That is the opioid killing not pills. Do your homework people.

1 year ago

FormerPatriot

A little more about this, just discovered you don’t have to wait until after the public hearing to let your voice be heard here:

My doctor and his patients had the same problems filling opioid scripts.My doctor had to switch all his patients to a pharmacy that deals with opioid meds.The paper script is picked up weekly by the pharmacy and meds are delivered to the patients house or workplace.It has it’s advantages,but it also has it’s drawbacks.As far as I know the pharmacy only has locations in 3 U.S. cities.

Thank you so much Ed Coghlan and National Pain Report for sharing this! A big shout out of thanks to Duane Pool and Ken Adams for all the hard work and hours putting together the new website and forming the – the Pain Advocacy Coalition- #ShareOurPain. It’s a welcoming and open group-tribe- open to everyone who cares about the state of pain care. We believe the time has come for a concerted effort using the 21st Century tools of E-advocacy, Twitter, Facebook, Instagram, You Tube, etc. All the collaborative tools of social media are all easily accessed by those in the pain community. This allows every patient to have a voice, even if it’s from home in their bed! We hope is to include and unite all the various groups advocating for timely and humanitarian pain care. We are engaging physicians, reporters, legislators, and other advocates so we can become one voice to become empowered pain care advocates. No more about us without us! By employing daily social media strategies, and interacting with a group of fellow patients and advocates, it no longer feels like shouting out alone in the wilderness. It can feel so alone when you are going against the dominate social narrative. When it comes to restoring humane pain care, how can you be silent! Taking action together is empowering!
Resist-Bot: https://painadvocacycoalition.com/project-type/resist-bot/
About us: https://painadvocacycoalition.com/
Our individual group, Families for Intractable Pain Relief, FIPR, http://familiesforiprelief.com/ also wishes to deeply thank the Pain Advocacy Coalition for standing in solidarity with Dr. Forest Tennant and all the other pain management physicians who are serving the pain community tirelessly and in good faith. The DEA over-reach into pain care has stop. Patients are suffering and doctors are scared. These good physicians are saving lives! We strive to bring truth back to the table! We agree that the patient/doctor needs to be restored and no longer influenced by third party influences. https://painadvocacycoalition.com/1746-2/
We all are working to step out to the sigma shadow. I have felt more empowered to make a difference, for my social media group- #ShareOurPain, and also for our group-Families for Intractable Pain Relief since joining efforts together with the Pain Advocacy Coalition. Thank you!

The Government should stay out of peoples lives when it comes to them acting as if they know more then a trained professional Dr. I suffer from chronic pain and my Pain Dr has cut my meds so severely ( due to the CDC guidelines) that all I do is lie in bed and cry. This is ridiculous. Thank you so much for this group and fighting for the little rights that we have left.

1 year ago

Maureen Mollico

@Jannie, are you asking what may help nerve pain?
Generally patients are prescribed Lyrica, Neurontin and Gabapentin for nerve pain.
And perhaps pain medication to help it. You ought to speak with your Doctor about it.
Best of luck.

1 year ago

Maureen Mollico

Amen! Thank you Jesus! This is it!! Answer to our prayers! Finally!
This is exactly what our community has needed and asked for!
This is soooo greatly informative, helpful and GIVES GREAT HOPE!!
Thank you to the founders, advocacy collaborators, patients, Doctors and all involved!!
The video included from the news station in Las Vegas is exactly what all news stations need to be doing! Excellent reporting and kudos to them!
I find this pretty easy to be involved in, as a CP warrior. And I surely will become a part of this
movement. God bless you all for your hard work and for bringing this to fruition on our behalf.
Keep strong warriors and please get involved in this! It may be our only resort.
I feel a great, positive filled train coming down the tracks….!!!

EXCELLENT I think these two should be praised for their site.Its also a very informative and we’ll put together site.Easy to read and full of info that otherwise you would have to read many sites to get.I have already recommended it to 5 ppl that have responded to various opioid bashing articles on the web.Everyday I scan the net reading the lies put forth by the opioid bashers now I have a place to send the ppl who respond in the comments section of these articles.Got to get to these fingers busy again now,there are alot of ppl in Chronic pain that still only know of the lies produced by mainstream media and not the truth on this so called epidemic.

1 year ago

Arianne Grand-Gassaway

The false narrative has spiraled out of control and has become an hysteria reminiscent of the REEFER MADNESS of old. Some of us were out here trying to sound a warning years ago, and most pain patients thought that they would be exempt. No one is exempt. Everyone in this country is one diagnosis or tragic accident away from being one of ‘us’.

Not only have patients with chronic pain been affected by this madness, but post surgical and acute pain protocols have as well. This will only get worse unless we start fighting back in earnest. NO MORE ABOUT US WITHOUT US! People are dying. Existing every day, every minute, in uncontrolled chronic pain is tantamount to torture. This should not be happening in a country that proclaims to be the greatest nation on Earth.

1 year ago

Kimberly

I would like to help with this group. On a personal level, my medications have been changed twice in the past six months. First due to Opana being pulled off the market; second, this month due to an inability to get my prescription for Percocet filled. In our new world in January 2018 my regular pharmacy of five years is being audited and cannot order narcotics, benzodiazepines, Adderall or similar medications until further notice (maybe indefinitely). This because they filled too many LEGITIMATE prescriptions last quarter. So off I went to attempt to fill my prescription at another pharmacy. I was turned away at six pharmacies either because they didn’t have the medication, it was on back order or the pharmacist had allotted their monthly allowable order to “monthly fills”. They simply could not take on any more “narcotic fills” even though I told them I would transfer my entire drug profile (all of my prescriptions). I am fortunate to have a very caring pain management physician who is highly skilled and an unbelievable human being. He took the time to call the pharmacist at a major drug store chain in Florida who refused to fill my prescription for Percocet, even after speaking with him an initial time to verify the script.

In what world should pharmacists have the right to question what medication or combination thereof is best to treat my chronic pain?

The pharmacist called me when he couldn’t initially speak with the doctor. He asked me what medical conditions I had & why was I taking Percocet?

I understand there are people overdosing on narcotics. That has hit my family too. My cousin overdosed on heroine when she couldn’t get her pain medication refilled.

Why can’t chronic pain patients, cancer patients & others requiring these life-saving medications, used properly by US, have our licenses or State IDs marked & in the now-standing database so that we can get our medications without the constant struggles, embarrassment & needless withdrawals??

1 year ago

Terri S

I’m a 53 yr old woman who has an entire spine that’s got defects and moving from PA to Mo., has put my life at risk, little did I know. I was under the care of a great pain specialist in PA. and thought from what I was told that I could continue care here. Sadly I’ve gone through withdrawal from my morphine even after going to the ER twice here in Marshall MO asking for assistance in the process, very sick at the time. I have no words for the way I was treated. I was made to leave after being scolded, asked if I abused my pills, wow. I’ve never thought of it let alone do that, I don’t drink, do drugs, never had a speeding ticket for Pete’s sake! Now that the morphine is continuing to leave my body my pain has become very close to unbearable. I’ve pondered suicide because of it, last night was my fourth night of little to no sleep. I’ve gone to so many doctor’s only to be turned away yet NOT ONCE have any of them said, let’s get an MRI. My spine won’t lie. So … If I do become one of hopefully not many of the people that not only ponder suicide but set it in motion, may I say God Bless this America and the cruel cruel hearts.
Veteran US Army

1 year ago

Dotsie Hunt

Thankfull to find a advoacy group to give our pain a voice. My pain was managed to a level that i could get out take a walk vist my kids and grangkids and greatgrandkids until 21/2 yrs ago when my pain Dr did not want to prescribe my pain meds but wanted to put me back on a pain med that just didn’t work for me . I stopped after 3 surgray , wrisrs carpel tune Knee total

1 year ago

David Schroeder

Lyrica seems to reduce nerve pain but it makes me crazy and obsessed with suicide.

1 year ago

Dave

The pain community is organizing like never before and its interesting to witness grassroots democracy in action.
Hopefully advocacy groups will learn the lessons of history when it comes to advocacy for there are snares and traps laid along the trail.
In addition its of vital importance to think carefully about vision values and methods.
Government has lacked vision in pain care and has been terribly sloppy with values and methods. So too has the health care industry when it comes to pain care.
Its a terrible thing to see and have no vision but even worse to not see things clearly. Hopefully advocacy groups will get it right.

1 year ago

Tina Stewart

Thanks to you and your group Alot of patients, spouses, families, and caretakers, can take sometime to feel relieved and start down a direction of real hope. Lets do this everyone. “No more about us without us”

Thank you National Pain Report for finding this group and to spread the word even more.
😘💙🌎🌍🌏😍

1 year ago

Denise Farmer

This is great news! Its time to lay that track down to Washington I have just now got a reply from the white house, and I have sent at least 5 emails alone to our President. I am willing to stand for Nevada. This is not my first rodeo, I was fighting the DEA back in 2010 I’ve lived in pain far too long to have to deal with this corruption again! If they want to help those that can’t get a grip on there addiction then by all means help them, but not at the cost of our lives. If the CDC wants to do the job there supposed to do, then help the people in Puerto Rico. I can’t believe how screwed up this Country has become.

1 year ago

Jill

This is great and my thanks to Duane and Ken for their work. My 30yr battle with back pain has worn me out emotionally and physically to a point where the fatigue makes even working on the computer more difficult than I can imagine. Too tired to read, watch TV, go on Facebook. Hard for anyone to understand that type of daily exhaustion that is my life. Too exhausted to think. Any avenue that makes it easier for myself and those like me to join the fight is so appreciated.

1 year ago

FormerPatriot

Apologies, I know I am repeatedly posting this like a troll but it is just too important to let anyone miss it.

The Food and Drug Administration (FDA, the Agency, or we) is announcing a public hearing entitled, “Opioid Policy Steering Committee: Prescribing Intervention—Exploring a Strategy for Implementation.” The purpose of the public hearing is to receive stakeholder input on how FDA might, under its Risk Evaluation and Mitigation Strategy (REMS) authority, improve the safe use of opioid analgesics by curbing overprescribing to decrease the occurrence of new addictions and limit misuse and abuse of opioid analgesics.
DATES:

The public hearing will be held on January 30, 2018, from 8:30 a.m. to 4:30 p.m. The public hearing may be extended or may end early depending on the level of public participation. Persons seeking to attend, or to present at, the public hearing must register by January 16, 2018. Electronic or written comments will be accepted after the public hearing until March 16, 2018. See the SUPPLEMENTARY INFORMATION section for registration date and information.
ADDRESSES:

The public hearing will be held at FDA White Oak Campus, 10903 New Hampshire Ave., Bldg. 31 Conference Center, the Great Room (Rm. 1503 B and C), Silver Spring, MD 20993-0002. Entrance for public hearing participants (non-FDA employees) is through Building 1 where routine security check procedures will be performed.

About ten years ago, I began to have spinal fractures from undiagnosed osteoporosis. Some could be repaired, others remained very painful. The only thing that made life tolerable was opiate pain medication which the doctor slowly increased until the pain was tolerable. The medication doesn’t eliminate the pain but reduces it to the point that I can get out of bed and have somewhat of a life.
Then, the CDC put out a set of guidelines that limited the amount of pain medication that any patient could have. The doctor has no choice, which means he is not allowed to adjust the amount of medication to meet the needs of each patient. My medication was cut in half leaving me in misery most every day and unable to sleep more than about one night out of three. These guidelines were developed in secret by a group of doctors who have no training or experience in pain management but own interest in rehabilitation clinics such as Phoenix House which has a success rate of about 3%. Since they couldn’t stay in business by doing a good job, they used political influence to force pain patients to use their services for which the government pays about $1,000/ day for.
Worst of all, there have been uncounted hundreds of pain patients who have taken their own lives because they couldn’t live with the pain.
This is the worst kind of tyranny; to refuse treatment for people in pain. It would be illegal to treat animals like this.

It’s unfortunate, letters and BEGGING wasnt enough. We must make thier lives miserable. Like Terry said lead follow or get out of the way makes the most SENCE. Yes, most of us are too sick to do much but videos from your phone to every dea cdc and politician. THE I SURANCE CO.PANIES WILL NEVER SIDE WITH US. WERE JUST A HUGE EXPENSE. IF I LIVED NEAR A DEA OFFICE I WOULD BE THERE EVERY DAY WITH A SIGN SAYING. PY PAIN IS KILLIMG ME , LEAVE.MY DR ALONE. THEY ARE LIKE THE MAFIA EXTORTING FROM DRS. Those thugs misinterpreted the cdc guidelines.
The guidelines are also PAIN OLD FASHIONED JIBBER JABBER. NO SCIENCE, NO TESTS, NO SURVEYS NO NOTHING TO JUSTIFY THE EXISTANCE OF THESE GUIDELINES. PUTTING A LIMIT ON AN FDA APPROVED MEDICATION WITGOUT ANY SCIENTIFIC TESTING is just torture torture torture.
MODERATE TO SEVERE CHRONIC 24/7 FOREVER PAIN IS NOT A LIFE, IT IS A DEATH SENTENCE. FIRST OUR SOLES DIE THEN OUR PARTS DIE SLOWLEY UNTIL WE PULL THE TRIGGER. WHAT HOLD.IS.BACK IS.THE.PAIN OUR LOVED.ONES WILL.GO THRU IF WE WERE DE

Great article
We should create a pain kit for the NONBELIEVERS.
Like the pregnant SUIT they used to do to young girls.
Each person gets 2 small bags of marbles for each sock, a strip of DUCT tape about 3 ft long with POINTY BROKEN stones stuck to it and attach to spine. A 3 inch call BEARING that would get velcroed tightly at base of skull and one for the inside of each knee.
DARE ANYOF THEMM TO TRYTHE RESTFOR 24HOURS ESPECIALLYIN BED TOO. THEN THEY COULD FEEL AT LEAST A FRACTION OF WHAT WE FEEL 24/7 WITH OUT OUR PAIN MEDICINE. EVEN IF WE WERE TAPERED TO HALF
JUST REDUCE THE KIT BY 50% . THEY PAIN IS STILL STRONG.
THE CDC IA ONE THING OUR DRS BIGGEST FEAR IS THE DEA THE DEA THE DEA!!!!. IF THAT THREAT IS GONE I STEONGLY BELIEVE OUR DRS WILL BE MORE APT TO HELP US. THE INS
COMPANIES AND HMO GROUPS MUST APPROVE OPIOID PRESCRIPTIONS AND PHARMACIES MUST ORDER IN DAVANCE FOR THE CHRONIC PATIENTS.
EVERY 30 DAYS THE SAME PEOPLE GET THE SAME PRISCROPTION, YET THEY ARE OUT OR THEYRE JUDGEMENTAL AND A HEALTHY 30 SOMETHING MAKE YOU FEEL LIKE A CRIMINAL.
I ACTUALLY CALL ONE WEEK IN ADVANVE OF PICK UP TO ASKE PHARMACIST TO ORDER SO ITSTHERE WHEN O COME IN. I MAGE IT A POIMT TO ESTABLISH A GOOD RELATIONSHIP WITH MY PHARMACIST
IM SURE ITS A BOTHER, BUT OVER THE LAST FEW MONTHS MY MEDICINE HAS BEEN THERE.
I ALSO FEEL COMFORTABLE REAISING MY VOICE IF ITS NOT. I SAY LOOK AT YOUR COMPUTER! FOR THE LAST YEAR I GET THE SAME THING EVERY MONTH. OF I RUN OUT I WILL BE IN THE ER WITHING 2 DAYS NOT JUST IM EXTREME PAIN BUT SUPER HIGH BLOOD PRESSURE. MY WIFE AND I WANT TO.MOVE, BUT CANT BECAUSE WE FEAR ILL NEVER GET TREATMENT
I HOPE SOME OF THIS ADVICE CAN HELP EVEN 1 PERSON AND I WOULD LOVE TO SEE THOSE HYPOCRATES USE MY PAIN KIT, ITS THE ONLY WAY THEY COULD.MAKE A FEAR ASSESENT OF WHAT CHRONIC PAIM.FEELS LIKE AT ITS MINIMAL LEVEL., BECAUSE I HAVE NUROPATHY ALSO THEY SHOULD ADD THUMBTACKS TO TUE MARBLES.

over a month ago I sent a letter to Senator in my state and I just got a reply back She brought up the CDC
” To help address this issue, the federal government has taken a number of steps to create a more appropriate balance that provides patients and providers with more tools to make the best treatment decisions. On March 18, 2016, the Centers for Disease Control and Prevention (CDC) released its Guideline for Prescribing Opioids for Chronic Pain, which provide non-binding recommendations and information to safely use opioids for clinicians who prescribe opioids for chronic pain. I appreciate knowing of your concerns that efforts to combat prescription drug abuse could reduce patient access to needed medications. While I believe that our country has excessively prescribed prescription drugs, please know that I understand your concerns and I will be working to ensure that we create a system that strikes the right balance by prescribing prescription drugs when they are truly needed and avoiding them when alternative treatment methods are available. ”
this is just part of letter I am unsure how to answer her back I need help.
Wisconsin

I was suicidal and despondent after docs removed my pain meds for Systemic Lupus Eurythmatosis, despite being fully disabled and compliant for over 20yrs. I was literally screamed at by a doc for taking my prescribed opioid meds as if taking pain meds is a moral choice. One doc asked me if it’s possible I could be imagining the pain.Over two years I walked myself off opioid meds 3 times due to the erratic prescribing of “docs”. #shareourpain has helped save my life and I will never forget the hope this group is giving me. I urge other CPP to JOIN and FIGHT for our human rights!
WE ARE HUMAN BEINGS AND YOU CANT TREAT US LIKE THIS.
FIGHT! RESIST!

I have been without pain meds for several years now. I was depressed, in pain, and felt like there was nothing I could do, and nowhere I could turn. I have now joined the https://painadvocacycoalition.com online and on twitter where we are joining together to embrace collaborative tools and social media to even the playing field and enter the 21ST century to unify our voice and amplify our message.By becoming more informed and engaging with our community online and with reporters, physicians, and with other advocates, we are now an empowered pain advocates. We are taking action and making an impact! Want to join us? Visit our website and tweet using #shareourpain. Let us know you are new to our group and we will welcome you and help you though the process of fighting for your rights as a chronic pain patient. Join us in our Resistbot campaign starting Feb 2018 by going here. https://painadvocacycoalition.com/project-type/resist-bot/

1 year ago

Patti

Thank you for wonderful article! Great Job! As a member of SOP/PAC it saved my life. I was at the end of my rope, depressed , hopeless, until I found this group. Now, I wake up everyday, still in pain, but with knowledge that when people join together and speak out, we can change this terrible situation we as pain pts have been forced on us.
I no longer feel powerless, hopeless. I know together, we are changing our history!
If your feeling hopeless, youre not alone! Please, join us!
Painadvocacycoalition.com

You are not alone!
I care about everyone of you!
We will win this battle.

Thank you again for wonderful article! PATTI

1 year ago

Monica Quiroz

Great cause focused on giving a voice to those who suffer with pain daily and their caregivers who may feel helpless due to lack of resources. Let’s all get on the train and make a difference.

1 year ago

Doug Hilgers

Thank You Ken and Duane for all of Your efforts to bring this Coallition to fruition !
Indeed , the only means for so many of Us” to board the train”!
Warm Regards
Doug

1 year ago

Steven Smith

Great idea!. I thought getting out of the way was the only option for me.

1 year ago

Philip Kraker

Thank God I have finally found an advocacy group for those of us who suffered severe chronic pain. I am at the mercy of the veterans administration who takes their marching orders from Washington. I’ve had doctors say they no longer
feel they are able to practice medicine in the way they deem proper anymore.
I joined the Marine Corps in 1969 because I felt I should have given something back to my country for the freedoms I enjoyed. However, I have contracted so many illnesses because I was a marine that many days when I wake up I just feel upset about it. I often wish the good Lord would just take me in my sleep. I promised my wife I would not iend vmy life prematurely or the truth is I would not be here to write this now. I never believed I would look forward to the day I died. However, I have been in that state of mind for 10 or 15 years now. I’m just so sick of fighting for something I feel would be a given considering the many maladies I suffer such as adult scoliosis, severe neuropathy, dupreans (sp?) contracture, migraine headaches and been diagnosed with ALS. Because the doctors have since retracted the ALS diagnosis, after seven months, they will not consider any pain medication even though I still suffer all the symptoms. I welcome this site with open arms.
I agree that it is important that we be aware of the bills that are being pushed through Congress by people who have no idea what I just like to suffer like this day in and day out. But what really gets their attention, is that’s writing to them. Getting 10 or 20,000 pages of real testimony on your desk every few days leaves the protest that is hard to ignore. I think we need to consider letter writing campaign‘s that are would end as our pain is without end.